question

[Guest guest]

You're welcome! Always my pleasure to share things.

> Re: [ ] question

>

> thank you, very interesting

>

[Guest guest]

I presented to the Dr with joint pain, unable to sleep and also night swet. I

was told all were symptoms of Lyme,I have the ringing in my ears, but I dont

know if that has anything to do with it or not. I have also had the vision

problems and was told it was NOT related.....but maybe it is. I have " floaters "

kinda like flashing lights. Not every day, but about once a month. I aslo have

noticed I dont see as well, I thought I was just old!

From: CR <rausch_cynthia@...>

Subject: [ ] question

Date: Sunday, October 4, 2009, 7:02 PM

 

does anyone suffering excrutiating bone and joint pain...and severe horrible

pain in my left ear...and vision is getting more blurred each day...and the

humming and ringing is so loud never goes away....is this lyme symptoms are

something else..in so much horrible pain and so so so weak...is anyone having

these symptoms please let me know...please

[Guest guest]

My vision got terrible up close, but after hyperbaric treatments I now can

see up close clearly. I still have double vision far away, another Lyme

symptom. Yes, to bone/joint pain definitely Lyme related. Constant ringing

in the ears is Lyme related. My left ear always seems blocked, so I go

around opening and closing my mouth looking like a gasping fish trying to

open it. Before my daughter was diagnosed with Lyme her left ear felt and

sounded like it had water in it and so she had an ear tube put in. She was

30 years old. It has been a disaster! The doctor was supposed to put in a

child's tube that would come out in 6 months and instead put in an adult

one. After changing doctors, they removed the tube and the hole/rip that

was left was enormous. She lost 20% of her hearing. For over a year they

tried to heal it, but with no success. The hole won't close because she has

Lyme we are told by her LLMD. Hopefully it will heal as she gets healthier.

She has only had three months of Lyme treatments. Problems with ears are

definitely Lyme related. Hyperbarics, antibiotics and supplements helped me

tremendously; at least for now I have my mind back even though some of the

physical challenges remain.

May God heal us

[Guest guest]

I too have lots of terrible joint pain (neck is worst, but also shoulders,

wrists, fingers, hips, lower back, knees, one ankle, and both feet). There is no

arthritic swelling since my first treatment, but this pain is severe despite

morphine, vicodin, neurontin and an Rx NSAID. Not all hurt at the same time,

more like bouncing around and switching off; except neck and lower back, which

hurt all the time. Some of my pain has a non-Lyme explanation (osteoarthritis,

pinched nerves, etc.), but I believe Lyme caused the cascade that started all of

it.

I've had floaters and halos around lights for years, with no one able to make a

Dx. Thankfully, the photophobia has gotten a bit better... still have to wear

sunglasses when outdoors, but no instant watery eyes and shooting pain. My

vision got blurry and has stayed that way, but my eyeglass Rx has barely changed

in 10 years--go figure.

, if you're feeling as bad as it sounds, try taking one hour at a time

instead of one day. Shortening your focus can help with the feeling overwhelmed

sometimes...

I would suggest keeping copious notes of all of this for your doc(s). Some of my

notes weren't needed for 5 or 10 years, but I ended up very grateful I kept

them!

Wishing you the best possible day,

>

>

> From: CR <rausch_cynthia@...>

> Subject: [ ] question

>

> Date: Sunday, October 4, 2009, 7:02 PM

>

>

>

> does anyone suffering excrutiating bone and joint pain...and severe horrible

pain in my left ear...and vision is getting more blurred each day...and the

humming and ringing is so loud never goes away....is this lyme symptoms are

something else..in so much horrible pain and so so so weak...is anyone having

these symptoms please let me know...please

>

[Guest guest]

I have major problems with joint and bone pain. Last night out of the blue my

shin bone hurt so bad that I couldn't stop crying. My hands are typically very

bad, along with my hip and knees. it moves around a bit and some days are better

than others.

Although I have a lot of pain with my joints, etc. I make a point of continuing

to work out. It seems to help. There are days when I have to modify what I'm

doing because of the pain, or take a day off, but I refuse to let the Lyme beat

me.

I also have had vision problems - blurring and huge sensitivity to light. My

ears don't ring so much, they've just been plugged solid now for what will be 2

years in November. The Ear, Nose and Throat doc couldn't find anything that can

explain it. I'm sure it's the Lyme just creating one more crazy symptom.

Hang in there. I know plenty of others suffer from joint pain and can probably

share other advice for coping. I've found that putting heat on the sore joints

can sometimes give a little relief -

Good luck.

Anne

>

> does anyone suffering excrutiating bone and joint pain...and severe horrible

pain in my left ear...and vision is getting more blurred each day...and the

humming and ringing is so loud never goes away....is this lyme symptoms are

something else..in so much horrible pain and so so so weak...is anyone having

these symptoms please let me know...please

>

[Guest guest]

Jen

I know how you feel, about being beat up by your own child. I have a 5 year old

who is sometimes stronger than me. Yes,the meltdowns and tantrums do sometimes

last a long time. My son has meltdowns over t.v. Shows and movies, and lots of

other stuff too. Lynette

>

> Is this AS? Or is it something else? This is so extreme...... please tell me

what you think, my dh is ready to take our son to the hospital.

>

> At 3:30 I went to pick up my older girls from school and he had to go with me

(he only goes for a few hours in the morning). He said he didn't want to go,

which is what he usually says. He actually had a very good day at school this

morning and was doing well when he got home. We got to the school and he told

me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no

because it starts at 8:00, which is his bedtime. Believe me, I said it as

gently as possible and tried to bargain, telling him I would put it on Netflix.

I feel like I'm always walking on eggshells with him.

>

> When his sisters got out to the van, he would not let them in, so we all just

stood there waiting for him to get over it. He didn't, unfortunately, he just

kept getting more wound up. He tried to break the van door and the front seat

and started punching at the windows and SCREAMING and swearing at me. Then he

got out of the van and ran to the corner. I didn't chase him because I know he

will run if I do that, so I just watched him from a distance. He kept inching

farther and farther and when he got out of sight, I had to follow him. I had to

leave all the other kids alone in the van. The oldest is 10 and the youngest is

just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes

I followed him and fought with him. When I was able to grab him, he kicked and

scratched me and tried to put me in wrestling holds. He is 8 and very very

strong. I couldn't believe no one stopped and said anything, we were on the

sidewalk of a very

> busy street. I was afraid he would run into the road. I literally could not

get him back to the van. I'm not strong enough. A cop drove by and just

looked. I waved, but he ignored me. Thanks a lot buddy.

>

> I had to promise him that he could watch the movie. It was the only way I

could get him back to the van. Then he wouldn't buckle up and he kept screaming

and calling me names. We had to stop at the bank. I have to make our car

payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We

just went through the drive through and the whole time he was yelling that he

was going to kill me and other variations on that theme. Then he climbed into

the back of the van-- the storage area and wouldn't get back in his seat.

>

> When we got home he was still going. I was supposed to work tonight, but I

can't because I see clients at my house. I had to cancel at the last minute

because they surely would have wondered about the screaming and swearing and

thumping coming from the basement! This is not good for my business. We are

supposed to go to my sister's wedding three hours away tomorrow and I don't know

if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on

my shin where he kicked me, and scratches that are bleeding on my hand.

>

> He hasn't been this bad for a while. A couple months. Is this AS? It seems

so extreme. Nothing helps. Nothing. Is this something else?

>

> If someone can offer me a medicine that will work, I am at the point where I

will give it to him. All of our lives stop when this happens. I don't even

know what I could have done. What can I do when he runs away and we are out?

>

> He just now has settled down. It lasted 2.5 hours. I'm exhausted.

>

> Jen

>

[Guest guest]

What? You are living my life??? Wow.

( ) question

Is this AS? Or is it something else? This is so extreme...... please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

So this is normal, huh?  Great.  So what do I do about it?  My dh just left and said he doesn't know if he can live here anymore.  I'm guessing that part might be common as well.From: Debra Balke <dlbalke@...> Sent: Thursday, October 15, 2009 6:32:22 PMSubject: Re: ( ) question

 

What?  You are living my life???  Wow. 

( ) question

 

Is this AS?  Or is it something else?  This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning).  He said he didn't want to go, which is what he usually says.  He actually had a very good day at school this morning and was doing well when he got home.  We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight.  I said no because it starts at 8:00, which is his bedtime.  Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix.  I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it.  He didn't, unfortunately, he just kept getting more wound up.  He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me.  Then he got out of the van and ran to the corner.  I didn't chase him because I know he will run if I do that, so I just watched him from a distance.  He kept inching farther and farther and when he got out of sight, I had to follow him.  I had to leave all the other kids alone in the van.  The oldest is 10 and the youngest is just a baby-- 16 months.  Thank goodness I have my 10 year old.  For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds.  He is 8 and very very strong.  I couldn't believe no one stopped and said anything, we were on the sidewalk of a very busy street.  I was afraid he would run into the road.  I literally could not get him back to the van.  I'm not strong enough.  A cop drove by and just looked.  I waved, but he ignored me.  Thanks a lot buddy.

I had to promise him that he could watch the movie.  It was the only way I could get him back to the van.  Then he wouldn't buckle up and he kept screaming and calling me names.  We had to stop at the bank.  I have to make our car payment-- I HAD to do this!  Otherwise, believe me, I wouldn't have today.  We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme.  Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going.  I was supposed to work tonight, but I can't because I see clients at my house.  I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement!  This is not good for my business.  We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can.  I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.  

He hasn't been this bad for a while.  A couple months.  Is this AS?  It seems so extreme.  Nothing helps.  Nothing.  Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him.  All of our lives stop when this happens.  I don't even know what I could have done.  What can I do when he runs away and we are out?  

He just now has settled down.  It lasted 2.5 hours.  I'm exhausted.

Jen

[Guest guest]

Well.... I wouldn't exactly say "normal" but it is very common with Asperger's. We do meds. Thank god. Otherwise, I would be completely insane. Meds are hard to do at first, but when you realize that the behavior is destroying the kid, the other kids, the parents, and the marriage, it starts to seem crazy not to do the meds. We used to have LOTS of this kind of insanity at our house. With the meds, he no longer tries to kill us, jump out of the car, etc. etc. etc. But, when we try to lower them, bits of it creeps back in and we forget how bad it was until we see it again. So, we have him on just barely enough meds to keep it so that it is "do-able" at our house. But, sometimes that means we get a big ugly scene if we aren't careful. We are doing Zoloft 50 mg per day, Tenex 1/2 mg twice a day and Abilify 20 mg per day. The more the antipsychotic, the better the child, but the more the weight gain. So, we did have some Risperdal added in at one point and he was the best ever, but we reduced it and now he is just "tolerable." I wish there were safer, better meds, with no weight gain. As for the husband. Ah, ha, ha..... mine used to do that too. That was always fun. Gives you warm fuzzies about your marriage too, as everyone crumbles under the strain of it all. Medicate the kid if you aren't already. Get yourself psychologically as stable as possible, with antidepressants if needed. I keep asking my mother, my husband, my friends, "Am I crazy or are they making me crazy?" They all tell me that the situation would make ANYONE crazy and it doesn't matter if I was crazy first or they are making me crazy...... I need Zoloft to survive this. I realized also that on 75 mg per day myself, rather than 50 mg per day myself, I can live through it better and get through each day easier with it. Same with my husband. It is a matter of survival at this point.

Tell the damn husband to step up to the plate, act like a man, and if he doesn't you are leaving and HE will get full custody of the kids. Ha, ha, ha...... The only divorce proceeding where both parents fight over who HAS to have the kids...... Only kidding.

Hang in there. Been there, done that. It is exhausting.... absolutely exhausting. One day at a time. One hour at a time. Just get through tonight. Baby steps. What is the minimum you need to do right now to get by.

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

I just went through my 3 hours' hell with my boy, who now is playing piano like an angel. Such beautiful music -- what happened during past 3 hours almost seemed like a nightmare...

But I do wonder, though, how you parents set expectations for your AS child? Where do you draw the line that you would just cut him slacks and let it go? When and how do you know that you just have to give up on your dream of this bright child?

After both of us are exhausted, I do often realize that quite often I could have just cut the whole meltdown down to within minutes by having said "yes", "yes", "ok", "you can have that", ..., to all the OCD requests he was making during the meltdowns. But I am having such tough time letting it go, though, to think that I would have to lower my expectations and continue to cut him slacks just to get by... He is such a smart boy: I taught him multiple-digit multiplication & division when he was 3!

But as he gets older and I get more stressed daily, this thought kept creeping in: when is enough enough? How do you even know?

From: Debra Balke <dlbalke@...>Subject: Re: ( ) question Date: Thursday, October 15, 2009, 5:50 PM

Well.... I wouldn't exactly say "normal" but it is very common with Asperger's. We do meds. Thank god. Otherwise, I would be completely insane. Meds are hard to do at first, but when you realize that the behavior is destroying the kid, the other kids, the parents, and the marriage, it starts to seem crazy not to do the meds. We used to have LOTS of this kind of insanity at our house. With the meds, he no longer tries to kill us, jump out of the car, etc. etc. etc. But, when we try to lower them, bits of it creeps back in and we forget how bad it was until we see it again. So, we have him on just barely enough meds to keep it so that it is "do-able" at our house. But, sometimes that means we get a big ugly scene if we aren't careful. We are doing Zoloft 50 mg per day, Tenex 1/2 mg twice a day and Abilify 20 mg per day. The more the antipsychotic, the

better the child, but the more the weight gain. So, we did have some Risperdal added in at one point and he was the best ever, but we reduced it and now he is just "tolerable." I wish there were safer, better meds, with no weight gain. As for the husband. Ah, ha, ha..... mine used to do that too. That was always fun. Gives you warm fuzzies about your marriage too, as everyone crumbles under the strain of it all. Medicate the kid if you aren't already. Get yourself psychologically as stable as possible, with antidepressants if needed. I keep asking my mother, my husband, my friends, "Am I crazy or are they making me crazy?" They all tell me that the situation would make ANYONE crazy and it doesn't matter if I was crazy first or they are making me crazy...... I need Zoloft to survive this. I realized also that on 75 mg per day myself, rather than 50 mg per day myself, I

can live through it better and get through each day easier with it. Same with my husband. It is a matter of survival at this point.

Tell the damn husband to step up to the plate, act like a man, and if he doesn't you are leaving and HE will get full custody of the kids. Ha, ha, ha...... The only divorce proceeding where both parents fight over who HAS to have the kids...... Only kidding.

Hang in there. Been there, done that. It is exhausting.. .. absolutely exhausting. One day at a time. One hour at a time. Just get through tonight. Baby steps. What is the minimum you need to do right now to get by.

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one

stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

Debra,,,

You are wonderful to read.

Robin

From: Debra Balke <dlbalke@...>Subject: Re: ( ) question Date: Thursday, October 15, 2009, 7:50 PM

Well.... I wouldn't exactly say "normal" but it is very common with Asperger's. We do meds. Thank god. Otherwise, I would be completely insane. Meds are hard to do at first, but when you realize that the behavior is destroying the kid, the other kids, the parents, and the marriage, it starts to seem crazy not to do the meds. We used to have LOTS of this kind of insanity at our house. With the meds, he no longer tries to kill us, jump out of the car, etc. etc. etc. But, when we try to lower them, bits of it creeps back in and we forget how bad it was until we see it again. So, we have him on just barely enough meds to keep it so that it is "do-able" at our house. But, sometimes that means we get a big ugly scene if we aren't careful. We are doing Zoloft 50 mg per day, Tenex 1/2 mg twice a day and Abilify 20 mg per day. The more the antipsychotic, the

better the child, but the more the weight gain. So, we did have some Risperdal added in at one point and he was the best ever, but we reduced it and now he is just "tolerable." I wish there were safer, better meds, with no weight gain. As for the husband. Ah, ha, ha..... mine used to do that too. That was always fun. Gives you warm fuzzies about your marriage too, as everyone crumbles under the strain of it all. Medicate the kid if you aren't already. Get yourself psychologically as stable as possible, with antidepressants if needed. I keep asking my mother, my husband, my friends, "Am I crazy or are they making me crazy?" They all tell me that the situation would make ANYONE crazy and it doesn't matter if I was crazy first or they are making me crazy...... I need Zoloft to survive this. I realized also that on 75 mg per day myself, rather than 50 mg per day myself, I

can live through it better and get through each day easier with it. Same with my husband. It is a matter of survival at this point.

Tell the damn husband to step up to the plate, act like a man, and if he doesn't you are leaving and HE will get full custody of the kids. Ha, ha, ha...... The only divorce proceeding where both parents fight over who HAS to have the kids...... Only kidding.

Hang in there. Been there, done that. It is exhausting.. .. absolutely exhausting. One day at a time. One hour at a time. Just get through tonight. Baby steps. What is the minimum you need to do right now to get by.

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one

stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

__________________________________________________

[Guest guest]

Thank you so much for responding.Meds are my absolute last resort.  And having said that, I think we've arrived at the place where the last resort is appropriate.  I made an appointment with the doctor, but it's still a week away.  How long is the process once it has begun?  I imagine our family doc will have to refer us to other people in order to prescribe meds?  Can I ask how old your son is and how long he's been on meds?  Have you noticed side effects that you feel are significant?  Is it something he will have to do the rest of his life?  Does he take them willingly?  (I imagine mine will not, at least in the beginning)  Did you start with one med at a time, or do they usually give combinations in the

beginning?You would think I would know a thing or two about Aspergers, but I really don't know anything.  It was there always, but never so extreme until early this year.  I have a theory as to why, but I don't know if its right or if it even matters. Dh came home, which didn't completely surprise me.  I just could do without the d.r.a.m.a., you know?  We have six kids, one with AS, there is enough drama here without him adding to it.  And I was thinking he needs to be a man, so you must have read my mind.  I hadn't thought of the threat of making him have custody.  lol  That might work.  It just makes me so mad that he thinks he can just throw up his hands and be done with it all.The minimum I need to do right now..... make enough food for the next two days for my family of 8 (we are GFCF) so we can go to my sister's wedding tomorrow.  Try not to worry that

horrible things might happen on the trip, while at the wedding, or at the hotel.  Pack for 8 people.  Too much.  Actually, the minimum I have to do at this very moment is make myself some decaf cappuccino and go to bed.  That sounds much better:)From: Debra Balke <dlbalke@...> Sent: Thursday, October 15, 2009 8:50:32 PMSubject: Re:

( ) question

 

Well.... I wouldn't exactly say "normal" but it is very common with Asperger's.  We do meds.  Thank god.  Otherwise, I would be completely insane.  Meds are hard to do at first, but when you realize that the behavior is destroying the kid, the other kids, the parents, and the marriage, it starts to seem crazy not to do the meds.  We used to have LOTS of this kind of insanity at our house.  With the meds, he no longer tries to kill us, jump out of the car, etc. etc. etc.  But, when we try to lower them, bits of it creeps back in and we forget how bad it was until we see it again.  So, we have him on just barely enough meds to keep it so that it is "do-able" at our house.  But, sometimes that means we get a big ugly scene if we aren't careful.   We are doing Zoloft 50 mg per day, Tenex 1/2 mg twice a day and Abilify 20 mg per day.  The more the antipsychotic, the better the child, but the more the weight gain.  So, we did have some Risperdal added in at one point and he was the best ever, but we reduced it and now he is just "tolerable."  I wish there were safer, better meds, with no weight gain.  As for the husband.  Ah, ha, ha..... mine used to do that too.  That was always fun.  Gives you warm fuzzies about your marriage too, as everyone crumbles under the strain of it all.  Medicate the kid if you aren't already.  Get yourself psychologically as stable as possible, with antidepressants if needed.  I keep asking my mother, my husband, my friends, "Am I crazy or are they making me crazy?"   They all tell me that the situation would make ANYONE crazy and it doesn't matter if I was crazy first or they are making me crazy...... I need Zoloft to survive this.  I realized also that on 75 mg per day myself, rather than 50 mg per day myself, I can live through it better and get through each day easier with it.  Same with my husband.  It is a matter of survival at this point. 

 

Tell the damn husband to step up to the plate, act like a man, and if he doesn't you are leaving and HE will get full custody of the kids.  Ha, ha, ha......  The only divorce proceeding where both parents fight over who HAS to have the kids......    Only kidding.

 

Hang in there.  Been there, done that.  It is exhausting.. .. absolutely exhausting.  One day at a time.  One hour at a time.  Just get through tonight.  Baby steps.  What is the minimum you need to do right now to get by.  

( ) question

 

Is this AS?  Or is it something else?  This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning).  He said he didn't want to go, which is what he usually says.  He actually had a very good day at school this morning and was doing well when he got home.  We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight.  I said no because it starts at 8:00, which is his bedtime.  Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix.  I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it.  He didn't, unfortunately, he just kept getting more wound up.  He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me.  Then he got out of the van and ran to the corner.  I didn't chase him because I know he will run if I do that, so I just watched him from a distance.  He kept inching farther and farther and when he got out of sight, I had to follow him.  I had to leave all the other kids alone in the van.  The oldest is 10 and the youngest is just a baby-- 16 months.  Thank goodness I have my 10 year old.  For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds.  He is 8 and very very strong.  I couldn't believe no one stopped and said anything, we were on the sidewalk of a very busy street.  I was afraid he would run into the road.  I literally could not get him back to the van.  I'm not strong enough.  A cop drove by and just looked.  I waved, but he ignored me.  Thanks a lot buddy.

I had to promise him that he could watch the movie.  It was the only way I could get him back to the van.  Then he wouldn't buckle up and he kept screaming and calling me names.  We had to stop at the bank.  I have to make our car payment-- I HAD to do this!  Otherwise, believe me, I wouldn't have today.  We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme.  Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going.  I was supposed to work tonight, but I can't because I see clients at my house.  I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement!  This is not good for my business.  We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can.  I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.  

He hasn't been this bad for a while.  A couple months.  Is this AS?  It seems so extreme.  Nothing helps.  Nothing.  Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him.  All of our lives stop when this happens.  I don't even know what I could have done.  What can I do when he runs away and we are out?  

He just now has settled down.  It lasted 2.5 hours.  I'm exhausted.

Jen

[Guest guest]

Don't laugh, but I am actually a pediatric neurologist here in San Obispo, California. It was our last resort too. But, you can see the writing on the wall as you get close to it and it sounds like you are nearing the med-free end.

I have a 13 year old son with high functioning autism and a 9 year old daughter with Aspergers and a 40 something husband with Aspergers. I can't imagine in any way how you are doing it with all those kids! OMG! Pack for 8 people???!!! AUGHH. Maybe your "normal" kids help??? I don't know what normal is like anymore. We kept my 9 year old off meds for years and years and just recently had to start them as she was absolutely completely miserable. We did everything else first, behavioral services, cognitive behavioral therapy, and on and on and on. She was our "second time around" kid. So, when we started seeing totally irrational behavior that was just nuts, we tried to live with it until it wasn't do-able anymore. That was a month or two ago. Then we started Zoloft that made her more nuts, quickly stopped it, and started very very low dose Abilify. Just barely takes the edge off the crazy so she can function and we can safely live with her. My 13 year old was horribly aggressive at 2 years old. I think by 4 we had had it with any other behavioral type of intervention and started Tenex. Very safe med, worked for several years until the stresses of school became too much around 2nd grade. Then, as he was bigger, meltdowns were just by default uglier and scarier. We tried stimulants - made him crazy, Strattera - made him even crazier. Then finally gave up and brought in the big guns, Risperdal. We thought about hospitalization several times, but knowing that they would merely drug him out with Risperdal, we did it ourselves at home. Instant fix to the point of he was safe again. Then, tried several times to get rid of the Risperdal and couldn't. Tried to add Tenex in, Zoloft in to "spare" the amount of Risperdal. It helps a little. He then developed tardive dyskinesia on Risperdal and we had to stop it. It was SO bad off Risperdal then (I think around age 11) that he was trying to jump out of the car, attack us, etc. It was horrible. So, it was either out of home placement or another med. We started Abilify as the risk of tardive dyskinesia is much lower and he thank god has done well. It isn't perfect, but we can live with it. We see Dr. Glenn Elliott at Children's Health Council up by Stanford University. He probably has the most expertise in meds. Even he was trying to get us to push the meds higher, but I worry about side effects. The main issues with the antipsychotics are weight gain and the risk of tardive dyskinesia, which can be a permanent tic-like movement of the mouth. It can stay even when the medicine is removed.

A good doc would try to sort out if a "mood stabilizer" like Lamictal, Trileptal, Depakote would be helpful for your son or an antipsychotic like Abilify or Risperdal is needed (these are like taking a sledge hammer to the problem and help multiple facets - irritability, aggression, anxiety, sleep issues, social relatedness). People will use antidepressants like Zoloft for anxiety, but they can worsen kids with bipolar tendencies. My daughter was happier on Zoloft for the brief time she was on it (about 2 to 3 weeks) but if she got upset about something she would go off like a crazed person, raging for 2 hours, trashing the house and anyone near her. This isn't her norm at all, but Zoloft clearly brought that out. Ugh! That was awful. We are just recovering from that. People will use Tenex for "overaroused, aggressive ADHD" It works a bit for my son, but higher doses make him tearful.

It truly is trial and error, which is an awful process but the only one available. There is a totally inappropriately worded site that I just love, called http://www.crazymeds.us/ It is written by an Aspergers man who also has epilepsy and bipolar disorder. His aspie obsession is psych meds. I have been reading his site for 10 years. His info on all the meds is so right on and up to date it is just amazing. People will also talk back and forth about their experiences with the meds too. It is nice to hear what adults think, when your kid himself can't actually explain in adult terms how he is feeling and what the effects of the meds are.

Oh, and don't think we just did meds..... we have done four or five different in home behavioral ABA programs, cognitive behavioral therapy, speech therapy, psychiatrists, psychologists, social skills therapy, and on and on and on and on..... For just plain crazy, meds work best. Of course, if there is any way to "behavior mod it away" do that first. But, sometimes it is pretty obvious, like with my daughter recently, that the kids is just miserable and it is an ongoing state of being that extra attention spent on them isn't going to fix. Of course, always look at the chaos in your life, try to downsize, keep your own emotional state going well, get time away, etc. All the other obvious things you might be able to fix. But, I am going to assume you have already thought of all of those things.

With my first autistic kid I beat myself up over every problem he had, every meltdown, tried to figure out what I was doing wrong. With the second autistic kid now, ah hell..... that is just plain crazy behavior and I KNOW nothing else fixes THAT. Sure, I tried counseling, cognitive behavioral therapy, etc. for a year or two and hoped it would help, but now that my daughter is older, it is just as crazy as my son was and clearly no amount of therapy will fix it and medication is necessary as our, again, last resort.

Hang in there!!!

Debra Balke

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

Hi Jen,

I can't comment personally on the length of time before the meds kick in, because my son refused to take them. What I have been told is reaction time varies with each child; some noticed changes within a few weeks and others have said it took about 4 months. If your son has been diagnosed by a Psychiatrist, they would prescribe the meds.

To learn about Asperger's I suggest you check out www.pacer.org This site is very informative and has many valuable contacts and aspie-parent support that would benefit you.

As far as what to do; the first thing I'd suggest is to do those quickie errands when you have him alone with you, before you fill the van up with kids (stimulus overload). If you know his triggers, then you know you're about to give him an answer he doesn't want to hear, so be Vague. I would say things like, "Ohh, that would be FUN to watch wouldn't it?, Which one is your favorite, what color is his bandanna?" and try to keep him talking about it without answering, until you're home and he's in a safe place to meltdown.

Aspies typically have some overwhelming interest in something ~ yours may be obsessing about Ninja turtles? ~ bring those toys along and try to use his interest in them to 'distract' him.

When he jumps out of the car, he's lost control and needs you to keep him safe. Most cars and vans have child locks on the doors, see if you can find the switch so he will not be able to jump out. When he's locked in the van, remind him repeatedly that what he wants is to go home and as soon as he buckles up you can go home, but not until he buckles up. Bribery is a tool, use it if it buys you some sanity. There's no easy answers, each aspie is so unique.

My son is 15 now and he still jumps out of cars, refuses to get in them, refuses seat belting puts holes in his walls, threatens my life, property, has major meltdowns and destructive outbursts at home. He calls me things I've never even HEARD of before.

I've gotten so I don't respond much at all anymore when he comes unglued... call me Valium. But I am a big believer in consequences, so when he calms down (sometimes it's days or weeks later) I remind him he has property to fix ~ his fix-it jobs are "creative". Sometimes I think the holes look better than the fix, but I smile my approval. When he refuses belting in the car, I stop, until he buckles up. When he punches a hole... he has to patch it up. If he refuses to turn down his blaring music, I cut the power to his room. I know.. I'm tough.

As much as aspie's resist anyone having any control over them, it scares the crap out of them not to have known boundaries and they need us to set limits and expectations (that they can test over and over). Even if the expectation is something that seems obvious and any other parent would take for granted. With aspies you have to start small, and build... you must be very specific and you can't assume anything.

For instance ~ this is the instruction I had with my son who was 13 at the time and wanted to start making his own lunches:

" Do not use any knives of any kind out of the kitchen. In the kitchen do not use any knives (especially not a butcher's cleaver), against anything wooden, such as furniture, nor against appliances, or anything that has a metal surface and most especially do not use them on glass, such as windows, and also do not ever use them on people. They are ONLY to be used on cutting boards (shown example) and in the kitchen. Soon after, my counter top had deep cleavered hack marks in it. When I asked him what happened, he told me that he was checking out the cleaver on the counter top to see what would happen, because it wasn't on the "No-list". He figured if the cleaver could damage the counter top, then he didn't think he should use it on a cutting board because it would surely damage that! ... It's hard to argue with that aspie logic.

I don't know how you manage with 6 kids.. may you never run out of Calgon....and decaff cappacino!

From: Jen Marks <barefootmamma@...>Subject: Re: ( ) question Date: Thursday, October 15, 2009, 10:09 PM

Thank you so much for responding.

Meds are my absolute last resort. And having said that, I think we've arrived at the place where the last resort is appropriate. I made an appointment with the doctor, but it's still a week away. How long is the process once it has begun? I imagine our family doc will have to refer us to other people in order to prescribe meds?

Can I ask how old your son is and how long he's been on meds? Have you noticed side effects that you feel are significant? Is it something he will have to do the rest of his life? Does he take them willingly? (I imagine mine will not, at least in the beginning) Did you start with one med at a time, or do they usually give combinations in the beginning?

You would think I would know a thing or two about Aspergers, but I really don't know anything. It was there always, but never so extreme until early this year. I have a theory as to why, but I don't know if its right or if it even matters.

Dh came home, which didn't completely surprise me. I just could do without the d.r.a.m.a., you know? We have six kids, one with AS, there is enough drama here without him adding to it. And I was thinking he needs to be a man, so you must have read my mind. I hadn't thought of the threat of making him have custody. lol That might work. It just makes me so mad that he thinks he can just throw up his hands and be done with it all.

The minimum I need to do right now..... make enough food for the next two days for my family of 8 (we are GFCF) so we can go to my sister's wedding tomorrow. Try not to worry that horrible things might happen on the trip, while at the wedding, or at the hotel. Pack for 8 people. Too much. Actually, the minimum I have to do at this very moment is make myself some decaf cappuccino and go to bed. That sounds much better:)

From: Debra Balke <dlbalke@...> Sent: Thursday, October 15, 2009 8:50:32 PMSubject: Re: ( ) question

Well.... I wouldn't exactly say "normal" but it is very common with Asperger's. We do meds. Thank god. Otherwise, I would be completely insane. Meds are hard to do at first, but when you realize that the behavior is destroying the kid, the other kids, the parents, and the marriage, it starts to seem crazy not to do the meds. We used to have LOTS of this kind of insanity at our house. With the meds, he no longer tries to kill us, jump out of the car, etc. etc. etc. But, when we try to lower them, bits of it creeps back in and we forget how bad it was until we see it again. So, we have him on just barely enough meds to keep it so that it is "do-able" at our house. But, sometimes that means we get a big ugly scene if we aren't careful. We are doing Zoloft 50 mg per day, Tenex 1/2 mg twice a day and Abilify 20 mg per day. The more the antipsychotic, the

better the child, but the more the weight gain. So, we did have some Risperdal added in at one point and he was the best ever, but we reduced it and now he is just "tolerable." I wish there were safer, better meds, with no weight gain. As for the husband. Ah, ha, ha..... mine used to do that too. That was always fun. Gives you warm fuzzies about your marriage too, as everyone crumbles under the strain of it all. Medicate the kid if you aren't already. Get yourself psychologically as stable as possible, with antidepressants if needed. I keep asking my mother, my husband, my friends, "Am I crazy or are they making me crazy?" They all tell me that the situation would make ANYONE crazy and it doesn't matter if I was crazy first or they are making me crazy...... I need Zoloft to survive this. I realized also that on 75 mg per day myself, rather than 50 mg per day myself, I

can live through it better and get through each day easier with it. Same with my husband. It is a matter of survival at this point.

Tell the damn husband to step up to the plate, act like a man, and if he doesn't you are leaving and HE will get full custody of the kids. Ha, ha, ha...... The only divorce proceeding where both parents fight over who HAS to have the kids...... Only kidding.

Hang in there. Been there, done that. It is exhausting.. .. absolutely exhausting. One day at a time. One hour at a time. Just get through tonight. Baby steps. What is the minimum you need to do right now to get by.

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one

stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

I wish I were closer to CA so we could come see you!  Pretty impossible all the way here in Michigan.  There was an excellent ped neuro in Detroit whom we took our oldest dd to, but he has recently retired.  He's probably the best doctor I've ever met.So you have three people on the spectrum?  Wow.  That is a lot to deal with!Yep, I'm packing for 8 today.  I was too tired after yesterday's ordeal to do anything last night.  This is my first break of the day, and likely only.  I'm cooking and packing and generally going absolutely nuts.  lol  None of the kids will help, and I don't think my yelling at them has done any good.  lol  I've given myself until the timer for the cake goes off and then I have to get

up.There are a few things that scare me about the meds.  One, which I think is the biggest deal, is that my family reacts to everything.  Our oldest got tremors when she took Prylosec, for example, and the seizure meds either did the opposite of what they were supposed to do, or gave her the worst of the side effects with no benefits.  She took Depakote and Lamictal, among many others (all for short periods).  The Depakote was shutting her liver down to the point where they made an emergency appointment with whatever doc it is that talks to you about liver transplants.  I decided to take her off the Depakote instead and lo and behold, her numbers normalized.Another thing that makes me very nervous is the very good possibility that it can make things worse while trying to figure out what to take and how much.  Worse?  The thought is frankly terrifying to me.  And the thought of those things that

don't go away.... the TD sx.  Yikes.This is why they are my last resort.  Today I feel like maybe we can go longer.  I gave him his new remedy a bunch this morning, because he woke up in that same state, and he has calmed down a LOT, so I'm really really hoping we can fiddle with his remedy and make it work.  (I'm a homeopath..... can we still be friends?  Please?)My body hurts from yesterday's ordeal, which is my reminder that meds may indeed be in our not too distant future.  We can't live like that.  You are so right about the behavior affecting him and all of the rest of us too.  I never imagined myself in this place.  It sucks.My timer has gone off.  Time to get back to work.  Thank you!!From: Debra Balke <dlbalke@...> Sent: Thursday, October 15, 2009 11:54:40 PMSubject: Re: ( ) question

 

Don't laugh, but I am actually a pediatric neurologist here in San Obispo, California.  It was our last resort too.  But, you can see the writing on the wall as you get close to it and it sounds like you are nearing the med-free end.   

I have a 13 year old son with high functioning autism and a 9 year old daughter with Aspergers and a 40 something husband with Aspergers.  I can't imagine in any way how you are doing it with all those kids!  OMG!  Pack for 8 people???!!!  AUGHH.  Maybe your "normal" kids help???  I don't know what normal is like anymore.  We kept my 9 year old off meds for years and years and just recently had to start them as she was absolutely completely miserable.  We did everything else first, behavioral services, cognitive behavioral therapy, and on and on and on.  She was our "second time around" kid.  So, when we started seeing totally irrational behavior that was just nuts, we tried to live with it until it wasn't do-able anymore.  That was a month or two ago.  Then we started Zoloft that made her more nuts, quickly stopped it, and started very very low dose Abilify.  Just barely takes the edge off the crazy so she can function and we can safely live with her.  My 13 year old was horribly aggressive at 2 years old.  I think by 4 we had had it with any other behavioral type of intervention and started Tenex.  Very safe med, worked for several years until the stresses of school became too much around 2nd grade.  Then, as he was bigger, meltdowns were just by default uglier and scarier.  We tried stimulants - made him crazy, Strattera - made him even crazier.  Then finally gave up and brought in the big guns, Risperdal.  We thought about hospitalization several times, but knowing that they would merely drug him out with Risperdal, we did it ourselves at home.  Instant fix to the point of he was safe again.  Then, tried several times to get rid of the Risperdal and couldn't.  Tried to add Tenex in, Zoloft in to "spare" the amount of Risperdal.  It helps a little.  He then developed tardive dyskinesia on Risperdal and we had to stop it.  It was SO bad off Risperdal then (I think around age 11) that he was trying to jump out of the car, attack us, etc.  It was horrible.  So, it was either out of home placement or another med.  We started Abilify as the risk of tardive dyskinesia is much lower and he thank god has done well.  It isn't perfect, but we can live with it.  We see Dr. Glenn Elliott at Children's Health Council up by Stanford University.  He probably has the most expertise in meds.  Even he was trying to get us to push the meds higher, but I worry about side effects.  The main issues with the antipsychotics are weight gain and the risk of tardive dyskinesia, which can be a permanent tic-like movement of the mouth.  It can stay even when the medicine is removed.  

 

A good doc would try to sort out if a "mood stabilizer" like Lamictal, Trileptal, Depakote would be helpful for your son or an antipsychotic like Abilify or Risperdal is needed (these are like taking a sledge hammer to the problem and help multiple facets - irritability, aggression, anxiety, sleep issues, social relatedness) .  People will use antidepressants like Zoloft for anxiety, but they can worsen kids with bipolar tendencies.  My daughter was happier on Zoloft for the brief time she was on it (about 2 to 3 weeks) but if she got upset about something she would go off like a crazed person, raging for 2 hours, trashing the house and anyone near her.  This isn't her norm at all, but Zoloft clearly brought that out.  Ugh!  That was awful.  We are just recovering from that.  People will use Tenex for "overaroused, aggressive ADHD"  It works a bit for my son, but higher doses make him tearful.

 

It truly is trial and error, which is an awful process but the only one available.  There is a totally inappropriately worded site that I just love, called      http://www.crazymed s.us/   It is written by an Aspergers man who also has epilepsy and bipolar disorder.  His aspie obsession is psych meds.  I have been reading his site for 10 years.  His info on all the meds is so right on and up to date it is just amazing.  People will also talk back and forth about their experiences with the meds too.  It is nice to hear what adults think, when your kid himself can't actually explain in adult terms how he is feeling and what the effects of the meds are.

 

Oh, and don't think we just did meds..... we have done four or five different in home behavioral ABA programs, cognitive behavioral therapy, speech therapy, psychiatrists, psychologists, social skills therapy, and on and on and on and on.....  For just plain crazy, meds work best.  Of course, if there is any way to "behavior mod it away" do that first.  But, sometimes it is pretty obvious, like with my daughter recently, that the kids is just miserable and it is an ongoing state of being that extra attention spent on them isn't going to fix.  Of course, always look at the chaos in your life, try to downsize, keep your own emotional state going well, get time away, etc. All the other obvious things you might be able to fix.  But, I am going to assume you have already thought of all of those things.

 

With my first autistic kid I beat myself up over every problem he had, every meltdown, tried to figure out what I was doing wrong.  With the second autistic kid now, ah hell..... that is just plain crazy behavior and I KNOW nothing else fixes THAT.  Sure, I tried counseling, cognitive behavioral therapy, etc. for a year or two and hoped it would help, but now that my daughter is older, it is just as crazy as my son was and clearly no amount of therapy will fix it and medication is necessary as our, again, last resort.

 

Hang in there!!!

Debra Balke 

( ) question

 

Is this AS?  Or is it something else?  This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning).  He said he didn't want to go, which is what he usually says.  He actually had a very good day at school this morning and was doing well when he got home.  We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight.  I said no because it starts at 8:00, which is his bedtime.  Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix.  I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it.  He didn't, unfortunately, he just kept getting more wound up.  He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me.  Then he got out of the van and ran to the corner.  I didn't chase him because I know he will run if I do that, so I just watched him from a distance.  He kept inching farther and farther and when he got out of sight, I had to follow him.  I had to leave all the other kids alone in the van.  The oldest is 10 and the youngest is just a baby-- 16 months.  Thank goodness I have my 10 year old.  For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds.  He is 8 and very very strong.  I couldn't believe no one stopped and said anything, we were on the sidewalk of a very busy street.  I was afraid he would run into the road.  I literally could not get him back to the van.  I'm not strong enough.  A cop drove by and just looked.  I waved, but he ignored me.  Thanks a lot buddy.

I had to promise him that he could watch the movie.  It was the only way I could get him back to the van.  Then he wouldn't buckle up and he kept screaming and calling me names.  We had to stop at the bank.  I have to make our car payment-- I HAD to do this!  Otherwise, believe me, I wouldn't have today.  We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme.  Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going.  I was supposed to work tonight, but I can't because I see clients at my house.  I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement!  This is not good for my business.  We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can.  I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.  

He hasn't been this bad for a while.  A couple months.  Is this AS?  It seems so extreme.  Nothing helps.  Nothing.  Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him.  All of our lives stop when this happens.  I don't even know what I could have done.  What can I do when he runs away and we are out?  

He just now has settled down.  It lasted 2.5 hours.  I'm exhausted.

Jen

[Guest guest]

I think that you are on the right track to consider medication. When you see

your doctor, stress that this is an emergency situation to help speed things up.

Someone told me that if my son got out of control again, that I should call the

police and they would help get my son to an emergency room and from there he

could be admitted to the hospital and get tested. A lot of our kids have

co-morbid conditions, AS plus something else. So the meltdowns could just be AS

plus a lot of stress at home, but maybe your son has another issue besides AS?

I avoided meds for my son, too, until it seemed like there was no other choice.

Our family was walking on eggshells because we didn't know what would set him

off. My youngest daughter was starting to hide from our son and I felt like it

wasn't safe to leave him alone in the house. I certainly would never leave him

alone with his little sisters. Our doctor was cautious and started out with a

very small dosage, which we gradually increased over time. It made a huge

difference for our entire family.

[Guest guest]

Debra,

Your post was VERY helpful. My son has been on meds since he was 5, now almost 8, I'm starting to doubt them. He was on zoloft and ritilin for 6 months, I saw no improvement with behavior. Took him off both, then he was hospitalized, and they put him on risperdol, which basically dozed him out for the first month or so, then back to his old behaviors.. So they added aderol to the mix, which i believe worked for a little bit, but after a while (this includes increasing his meds gradually with his growth) I just wasn't seeing the results they said I would have. So again, weaned him off those meds, and am gonna try to start from scratch. I just think that meds for my son don't work, he seems immune!

From: Debra Balke <dlbalke@...> Sent: Thu, October 15, 2009 11:54:40 PMSubject: Re: ( ) question

Don't laugh, but I am actually a pediatric neurologist here in San Obispo, California. It was our last resort too. But, you can see the writing on the wall as you get close to it and it sounds like you are nearing the med-free end.

I have a 13 year old son with high functioning autism and a 9 year old daughter with Aspergers and a 40 something husband with Aspergers. I can't imagine in any way how you are doing it with all those kids! OMG! Pack for 8 people???!!! AUGHH. Maybe your "normal" kids help??? I don't know what normal is like anymore. We kept my 9 year old off meds for years and years and just recently had to start them as she was absolutely completely miserable. We did everything else first, behavioral services, cognitive behavioral therapy, and on and on and on. She was our "second time around" kid. So, when we started seeing totally irrational behavior that was just nuts, we tried to live with it until it wasn't do-able anymore. That was a month or two ago. Then we started Zoloft that made her more nuts, quickly stopped it, and started very very low

dose Abilify. Just barely takes the edge off the crazy so she can function and we can safely live with her. My 13 year old was horribly aggressive at 2 years old. I think by 4 we had had it with any other behavioral type of intervention and started Tenex. Very safe med, worked for several years until the stresses of school became too much around 2nd grade. Then, as he was bigger, meltdowns were just by default uglier and scarier. We tried stimulants - made him crazy, Strattera - made him even crazier. Then finally gave up and brought in the big guns, Risperdal. We thought about hospitalization several times, but knowing that they would merely drug him out with Risperdal, we did it ourselves at home. Instant fix to the point of he was safe again. Then, tried several times to get rid of the Risperdal and couldn't. Tried to add Tenex in, Zoloft in to "spare" the amount of

Risperdal. It helps a little. He then developed tardive dyskinesia on Risperdal and we had to stop it. It was SO bad off Risperdal then (I think around age 11) that he was trying to jump out of the car, attack us, etc. It was horrible. So, it was either out of home placement or another med. We started Abilify as the risk of tardive dyskinesia is much lower and he thank god has done well. It isn't perfect, but we can live with it. We see Dr. Glenn Elliott at Children's Health Council up by Stanford University. He probably has the most expertise in meds. Even he was trying to get us to push the meds higher, but I worry about side effects. The main issues with the antipsychotics are weight gain and the risk of tardive dyskinesia, which can be a permanent tic-like movement of the mouth. It can stay even when the medicine is removed.

A good doc would try to sort out if a "mood stabilizer" like Lamictal, Trileptal, Depakote would be helpful for your son or an antipsychotic like Abilify or Risperdal is needed (these are like taking a sledge hammer to the problem and help multiple facets - irritability, aggression, anxiety, sleep issues, social relatedness) . People will use antidepressants like Zoloft for anxiety, but they can worsen kids with bipolar tendencies. My daughter was happier on Zoloft for the brief time she was on it (about 2 to 3 weeks) but if she got upset about something she would go off like a crazed person, raging for 2 hours, trashing the house and anyone near her. This isn't her norm at all, but Zoloft clearly brought that out. Ugh! That was awful. We are just recovering from that. People will use Tenex for "overaroused, aggressive ADHD" It works a bit for my son, but higher doses

make him tearful.

It truly is trial and error, which is an awful process but the only one available. There is a totally inappropriately worded site that I just love, called http://www.crazymeds.us/ It is written by an Aspergers man who also has epilepsy and bipolar disorder. His aspie obsession is psych meds. I have been reading his site for 10 years. His info on all the meds is so right on and up to date it is just amazing. People will also talk back and forth about their experiences with the meds too. It is nice to hear what adults think, when your kid himself can't actually explain in adult terms how he is feeling and what the effects of the meds are.

Oh, and don't think we just did meds..... we have done four or five different in home behavioral ABA programs, cognitive behavioral therapy, speech therapy, psychiatrists, psychologists, social skills therapy, and on and on and on and on..... For just plain crazy, meds work best. Of course, if there is any way to "behavior mod it away" do that first. But, sometimes it is pretty obvious, like with my daughter recently, that the kids is just miserable and it is an ongoing state of being that extra attention spent on them isn't going to fix. Of course, always look at the chaos in your life, try to downsize, keep your own emotional state going well, get time away, etc. All the other obvious things you might be able to fix. But, I am going to assume you have already thought of all of those things.

With my first autistic kid I beat myself up over every problem he had, every meltdown, tried to figure out what I was doing wrong. With the second autistic kid now, ah hell..... that is just plain crazy behavior and I KNOW nothing else fixes THAT. Sure, I tried counseling, cognitive behavioral therapy, etc. for a year or two and hoped it would help, but now that my daughter is older, it is just as crazy as my son was and clearly no amount of therapy will fix it and medication is necessary as our, again, last resort.

Hang in there!!!

Debra Balke

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one

stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

I hear you! The drugs do suck. And yes, homeopathy, pharmacology..... all drugs, just a matter of how much mainstream science has studied it, that is all. Yes, we can still be friends. Too funny!

I wish there was the perfect solution! There are many nights I think I can't do it another day, but I tell myself that I will feel differently when I wake up the next morning and I just make myself go to bed and forget about it and then, amazingly, the next day I can do just one more day of it.

Yes, the idea of meds making it worse is a real concern. Absolutely. These drugs are like taking a giant sledgehammer to the problem. You never know what you are going to get. It is totally trial and error. And, the concern of what it will do to the kid in the long run. Who knows. That is why they truly are a last resort. But, we have been between a rock and a hard place several times and the drugs have been a lifesafer. There are true dangers to psychiatric hospitalization and residential placement, people often forget about that as well. Not to mention the negative impact on kids of divorce and other siblings falling apart under the stress. All of these things have "side effects" too, just like the drugs do.

It is scary. I don't think I want to be a grown up anymore...... tired of putting on the big girl pants every day.

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

I have the SAME problems!!

I am staying with my mom right now (long story why, but hopefully won't last for a lot longer), and every time my son starts to act up because he doesn't want to listen to something I'm telling him to do, ie. "finish your breakfast" "take a shower" "do your homework" etc, I talk sternly to him, and she doesn't think that he should ever be punished because he has a a disability. She wants to say that everything he does should be excused because of his "disability" and my response to that is, if we treat him like he has a disability, he's going to catch on to that, and pull that card whenever he can.

It is hard to know where the line is drawn on him being manipulative and just plain rotten, to where the asperger's has taken over. Sometimes I know he can't help what he's doing, and that's usually after the meltdowns have started, and he's just lost control. But up until that point, seriously believe that he knows what he's doing, and the second he doesn't get what he wants, game over.

One question I do have for everyone is how do you deal with the egocentricity's of an Aspie?? The selfishness that I know isn't on purpose, just how their minds work. Doesn't make it any less frustrating! I hate how selfish my son is, nothing he does is for anyone else, he doesn't care about others feelings, it's all about him all the time. I call it the "nicolas show" because that's what is going on if he's around.

From: caijiao cj zhao <caijiao@...> Sent: Thu, October 15, 2009 9:21:02 PMSubject: Re: ( ) question

I just went through my 3 hours' hell with my boy, who now is playing piano like an angel. Such beautiful music -- what happened during past 3 hours almost seemed like a nightmare...

But I do wonder, though, how you parents set expectations for your AS child? Where do you draw the line that you would just cut him slacks and let it go? When and how do you know that you just have to give up on your dream of this bright child?

After both of us are exhausted, I do often realize that quite often I could have just cut the whole meltdown down to within minutes by having said "yes", "yes", "ok", "you can have that", ..., to all the OCD requests he was making during the meltdowns. But I am having such tough time letting it go, though, to think that I would have to lower my expectations and continue to cut him slacks just to get by... He is such a smart boy: I taught him multiple-digit multiplication & division when he was 3!

But as he gets older and I get more stressed daily, this thought kept creeping in: when is enough enough? How do you even know?

From: Debra Balke <dlbalkecharter (DOT) net>Subject: Re: ( ) question Date: Thursday, October 15, 2009, 5:50 PM

Well.... I wouldn't exactly say "normal" but it is very common with Asperger's. We do meds. Thank god. Otherwise, I would be completely insane. Meds are hard to do at first, but when you realize that the behavior is destroying the kid, the other kids, the parents, and the marriage, it starts to seem crazy not to do the meds. We used to have LOTS of this kind of insanity at our house. With the meds, he no longer tries to kill us, jump out of the car, etc. etc. etc. But, when we try to lower them, bits of it creeps back in and we forget how bad it was until we see it again. So, we have him on just barely enough meds to keep it so that it is "do-able" at our house. But, sometimes that means we get a big ugly scene if we aren't careful. We are doing Zoloft 50 mg per day, Tenex 1/2 mg twice a day and Abilify 20 mg per day. The more the antipsychotic, the

better the child, but the more the weight gain. So, we did have some Risperdal added in at one point and he was the best ever, but we reduced it and now he is just "tolerable." I wish there were safer, better meds, with no weight gain. As for the husband. Ah, ha, ha..... mine used to do that too. That was always fun. Gives you warm fuzzies about your marriage too, as everyone crumbles under the strain of it all. Medicate the kid if you aren't already. Get yourself psychologically as stable as possible, with antidepressants if needed. I keep asking my mother, my husband, my friends, "Am I crazy or are they making me crazy?" They all tell me that the situation would make ANYONE crazy and it doesn't matter if I was crazy first or they are making me crazy...... I need Zoloft to survive this. I realized also that on 75 mg per day myself, rather than 50 mg per day myself, I

can live through it better and get through each day easier with it. Same with my husband. It is a matter of survival at this point.

Tell the damn husband to step up to the plate, act like a man, and if he doesn't you are leaving and HE will get full custody of the kids. Ha, ha, ha...... The only divorce proceeding where both parents fight over who HAS to have the kids...... Only kidding.

Hang in there. Been there, done that. It is exhausting.. .. absolutely exhausting. One day at a time. One hour at a time. Just get through tonight. Baby steps. What is the minimum you need to do right now to get by.

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one

stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

Hi Debra!! I also live in So. Cal. Now that you've revealed your profession, I'm sure you'll be inundated w/ questions-- like mine. What is your view about neurofeedback? or some call it biofeedback. I know it's been around for a long time but not much publicity about it. I was reading your post how you've tried all sorts of therapies, meds etc. but I did not see neurofeedback. As I've been following all the posting in this group, I've never heard anyone mention about neurofdbk. My 17 yo ds just got dx about 3 mo ago. This psychologist was my son's 4th dr and it's only this current dr that actually saw the AS aspect. This dr does wholistic psychology and this includes neurofeedback w/c he says he's been doing the past 3 yrs. He right away recommended

doing neurofdbk and thankfully my insurance covers it. My son has had about 15 sessions now and we do see some improvement. He is very reserved and shy kid but strong academically. By 10th grd the teachers have noticed that he is withdrawing from peers and that's when we sought psych therapy but didn't do much for him until this current dr. He's now a senior and he attended his very first H.S. dance by himself a couple wks ago. And he had a "blast" as he termed it. Mind you he's very, very shy w/ girls, but the girls in the dance took initiative to mingle w/ him and he went along w/ it and danced the night away w/ many girls. Wow!! we never thought this would happen !! of course we were thrilled. He's not on meds. So I can only attribute this stepping out of his comfort zone thru this neurofdbk and of course as answer to much much prayers. He's slowly trying to associate more w/ his

peers. He also appears to be more calm compared to before where he's prone to depression and sullen moods- but he's never really had any major or even minor meltdowns- he just keeps it inside him. So there, I don't know the acceptance of this form of therapy in general. Just curious what your views are. thnx. Vickie

From: Debra Balke <dlbalke@...> Sent: Thu, October 15, 2009 8:54:40 PMSubject: Re: ( ) question

Don't laugh, but I am actually a pediatric neurologist here in San Obispo, California. It was our last resort too. But, you can see the writing on the wall as you get close to it and it sounds like you are nearing the med-free end.

I have a 13 year old son with high functioning autism and a 9 year old daughter with Aspergers and a 40 something husband with Aspergers. I can't imagine in any way how you are doing it with all those kids! OMG! Pack for 8 people???!!! AUGHH. Maybe your "normal" kids help??? I don't know what normal is like anymore. We kept my 9 year old off meds for years and years and just recently had to start them as she was absolutely completely miserable. We did everything else first, behavioral services, cognitive behavioral therapy, and on and on and on. She was our "second time around" kid. So, when we started seeing totally irrational behavior that was just nuts, we tried to live with it until it wasn't do-able anymore. That was a month or two ago. Then we started Zoloft that made her more nuts, quickly stopped it, and started very very low

dose Abilify. Just barely takes the edge off the crazy so she can function and we can safely live with her. My 13 year old was horribly aggressive at 2 years old. I think by 4 we had had it with any other behavioral type of intervention and started Tenex. Very safe med, worked for several years until the stresses of school became too much around 2nd grade. Then, as he was bigger, meltdowns were just by default uglier and scarier. We tried stimulants - made him crazy, Strattera - made him even crazier. Then finally gave up and brought in the big guns, Risperdal. We thought about hospitalization several times, but knowing that they would merely drug him out with Risperdal, we did it ourselves at home. Instant fix to the point of he was safe again. Then, tried several times to get rid of the Risperdal and couldn't. Tried to add Tenex in, Zoloft in to "spare" the amount of

Risperdal. It helps a little. He then developed tardive dyskinesia on Risperdal and we had to stop it. It was SO bad off Risperdal then (I think around age 11) that he was trying to jump out of the car, attack us, etc. It was horrible. So, it was either out of home placement or another med. We started Abilify as the risk of tardive dyskinesia is much lower and he thank god has done well. It isn't perfect, but we can live with it. We see Dr. Glenn Elliott at Children's Health Council up by Stanford University. He probably has the most expertise in meds. Even he was trying to get us to push the meds higher, but I worry about side effects. The main issues with the antipsychotics are weight gain and the risk of tardive dyskinesia, which can be a permanent tic-like movement of the mouth. It can stay even when the medicine is removed.

A good doc would try to sort out if a "mood stabilizer" like Lamictal, Trileptal, Depakote would be helpful for your son or an antipsychotic like Abilify or Risperdal is needed (these are like taking a sledge hammer to the problem and help multiple facets - irritability, aggression, anxiety, sleep issues, social relatedness) . People will use antidepressants like Zoloft for anxiety, but they can worsen kids with bipolar tendencies. My daughter was happier on Zoloft for the brief time she was on it (about 2 to 3 weeks) but if she got upset about something she would go off like a crazed person, raging for 2 hours, trashing the house and anyone near her. This isn't her norm at all, but Zoloft clearly brought that out. Ugh! That was awful. We are just recovering from that. People will use Tenex for "overaroused, aggressive ADHD" It works a bit for my son, but higher doses

make him tearful.

It truly is trial and error, which is an awful process but the only one available. There is a totally inappropriately worded site that I just love, called http://www.crazymed s.us/ It is written by an Aspergers man who also has epilepsy and bipolar disorder. His aspie obsession is psych meds. I have been reading his site for 10 years. His info on all the meds is so right on and up to date it is just amazing. People will also talk back and forth about their experiences with the meds too. It is nice to hear what adults think, when your kid himself can't actually explain in adult terms how he is feeling and what the effects of the meds are.

Oh, and don't think we just did meds..... we have done four or five different in home behavioral ABA programs, cognitive behavioral therapy, speech therapy, psychiatrists, psychologists, social skills therapy, and on and on and on and on..... For just plain crazy, meds work best. Of course, if there is any way to "behavior mod it away" do that first. But, sometimes it is pretty obvious, like with my daughter recently, that the kids is just miserable and it is an ongoing state of being that extra attention spent on them isn't going to fix. Of course, always look at the chaos in your life, try to downsize, keep your own emotional state going well, get time away, etc. All the other obvious things you might be able to fix. But, I am going to assume you have already thought of all of those things.

With my first autistic kid I beat myself up over every problem he had, every meltdown, tried to figure out what I was doing wrong. With the second autistic kid now, ah hell..... that is just plain crazy behavior and I KNOW nothing else fixes THAT. Sure, I tried counseling, cognitive behavioral therapy, etc. for a year or two and hoped it would help, but now that my daughter is older, it is just as crazy as my son was and clearly no amount of therapy will fix it and medication is necessary as our, again, last resort.

Hang in there!!!

Debra Balke

( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one

stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

Neurofeedback is not proven effective for autism. But, that doesn't mean that sitting quietly, calmly, for 15 sessions, focusing on your stress levels, etc. etc. isn't helpful. It just means that it isn't more effective than placebo. There is often a huge placebo response to therapies. So, the real question is, could you for free sit in a room, drink warm milk, one hour per week, in a darkened room, all the while thinking it will help your autism, and will it work to the same degree? We haven't done neurofeedback as the data just doesn't look promising yet. We are doing swim team instead. The results have been fantastic for my son. He started a few months ago. I never thought I would see him doing this. He kind of saw his sister doing it for 5 months and wanted to try. So.... anything can be "therapy." He is so much happier, is making friends, etc. etc. etc. We also did a "hip hop" dance class with him and called it OT to ourselves. Remember, there can be a "negative side effect" to any therapy, such as time away from other sources of improvement or pleasure, added stress level from squeezing in one more thing to an overloaded kid, and one more stress on the family. We were offered neurofeedback recently for free and we said no, for those reasons. The data just isn't supportive yet. I personally would rather get a massage once a week for 15 weeks. Now THAT would make a huge difference in my stress level and ability to cope. Especially if I was told it WOULD make me better.... ( ) question

Is this AS? Or is it something else? This is so extreme..... . please tell me what you think, my dh is ready to take our son to the hospital.

At 3:30 I went to pick up my older girls from school and he had to go with me (he only goes for a few hours in the morning). He said he didn't want to go, which is what he usually says. He actually had a very good day at school this morning and was doing well when he got home. We got to the school and he told me he wanted to watch Teenage Mutant Ninja Turtles on TV tonight. I said no because it starts at 8:00, which is his bedtime. Believe me, I said it as gently as possible and tried to bargain, telling him I would put it on Netflix. I feel like I'm always walking on eggshells with him.

When his sisters got out to the van, he would not let them in, so we all just stood there waiting for him to get over it. He didn't, unfortunately, he just kept getting more wound up. He tried to break the van door and the front seat and started punching at the windows and SCREAMING and swearing at me. Then he got out of the van and ran to the corner. I didn't chase him because I know he will run if I do that, so I just watched him from a distance. He kept inching farther and farther and when he got out of sight, I had to follow him. I had to leave all the other kids alone in the van. The oldest is 10 and the youngest is just a baby-- 16 months. Thank goodness I have my 10 year old. For 40 minutes I followed him and fought with him. When I was able to grab him, he kicked and scratched me and tried to put me in wrestling holds. He is 8 and very very strong. I couldn't believe no one stopped and said anything, we were on the sidewalk of a very busy street. I was afraid he would run into the road. I literally could not get him back to the van. I'm not strong enough. A cop drove by and just looked. I waved, but he ignored me. Thanks a lot buddy.

I had to promise him that he could watch the movie. It was the only way I could get him back to the van. Then he wouldn't buckle up and he kept screaming and calling me names. We had to stop at the bank. I have to make our car payment-- I HAD to do this! Otherwise, believe me, I wouldn't have today. We just went through the drive through and the whole time he was yelling that he was going to kill me and other variations on that theme. Then he climbed into the back of the van-- the storage area and wouldn't get back in his seat.

When we got home he was still going. I was supposed to work tonight, but I can't because I see clients at my house. I had to cancel at the last minute because they surely would have wondered about the screaming and swearing and thumping coming from the basement! This is not good for my business. We are supposed to go to my sister's wedding three hours away tomorrow and I don't know if we can. I hurt my back wresting with him on the sidewalk, I have a bruise on my shin where he kicked me, and scratches that are bleeding on my hand.

He hasn't been this bad for a while. A couple months. Is this AS? It seems so extreme. Nothing helps. Nothing. Is this something else?

If someone can offer me a medicine that will work, I am at the point where I will give it to him. All of our lives stop when this happens. I don't even know what I could have done. What can I do when he runs away and we are out?

He just now has settled down. It lasted 2.5 hours. I'm exhausted.

Jen

[Guest guest]

Steve the proper protocol we run is 100-120 mgs a day broken down in to bi

weekly shot of 50-60 mgs m,th. By lowering the dosage in more frequent shots

this helps to control hormonal rollercoaster wise. Giving testosterone is one

one part of the equation , but have a qualified practioner evaluate also adrenal

and thyroid to complement your TRT to its fullest extent. If e2 is elevated then

proper e2 management is added. Once proper e2 and T are stabilzed for 8 weeks

then we add in HCG and dhea to finish off HRT to recieve optimal results with

minimal side effects

>

> I have a few questions about taking testosterone, I am 41yrs old and

> was diagnosed with hypogonadism, my level was 72 when they should be between

350-1000,my doctor said I've been hypogonadal for years due to small testicle

size, low body and facial hair....

>

> He started me on injectable cypionate, 200mg every 2 weeks. Since I am very

low on the scale do I still need to worry or worry at all about estrogen levels

while taking this drug?...I can only find information on body builders that use

high doses of testosterone.

>

> It's been a few days now taking my first shot, what should I expect from this

dose besides the sore leg I have now........how long does this take to start

working.

>

> Thanks for any help you may give,

>

> Steve

>

[Guest guest]

Hi Steve and welcome,

Your first shot 200 mgs is a good one to jump start your levels but to do this

every 2 weeks is not good it's old. What you need to do is learn to do your own

shots doing your next one a week after this firs one doing 100mgs. Have your

Dr. read page 11 of the AACE Guildlines it states to do shots every 7 to 10

days. Most of us do are own shots at home.

http://www.aace.com/pub/pdf/guidelines/hypogonadism.pdf

Get back in in 8 weeks and do labs checking your Estradiol levels being on TRT

of any kind can drive up your levels they need to be at about 20 pg/ml. You

need to get your Total T levels up into the upper 1/3 of your labs range this go

by how you feel. Read this link.

http://www.griffinmedical.com/male_hormone_modulation_therapy.html

Co-Moderator

Phil

> From: Steve D <daicompacifica@...>

> Subject: Question

>

> Date: Sunday, October 18, 2009, 7:14 AM

> I have a few questions about taking

> testosterone, I am 41yrs old and

> was diagnosed with hypogonadism, my level was 72 when they

> should be between 350-1000,my doctor said I've been

> hypogonadal for years due to small testicle size, low body

> and facial hair....

>

> He started me on injectable cypionate, 200mg every 2

> weeks.  Since I am very low on the scale do I still

> need to worry or worry at all about estrogen levels while

> taking this drug?...I can only find information on body

> builders that use high doses of testosterone.

>

> It's been a few days now taking my first shot, what should

> I expect from this dose besides the sore leg I have

> now........how long does this take to start working.

>

> Thanks for any help you may give,

>

> Steve

>

>

>

> ------------------------------------

>

>

[Guest guest]

--- " hardasnails1973 " <hardasnails1973@...> wrote:

>

> Steve the proper protocol we run is 100-120 mgs a day broken down in to bi

weekly shot of 50-60 mgs m,th.

I believe Hans meant 100-120 mgs per week. The dose would be divided into two

shots during that week, Monday and Thursday. This avoids the large swings in T

levels that you will get on 200mgs delivered only once in two-weeks. Two-week

dosing is no longer an acceptable dosing regimen.

[Guest guest]

I think you ment to say 100 to 120 mgs every week I do this all the time.

Co-Moderator

Phil

> From: hardasnails1973 <hardasnails1973@...>

> Subject: Re: Question

>

> Date: Sunday, October 18, 2009, 9:03 AM

> Steve the proper protocol we run is

> 100-120 mgs a day broken down in to bi weekly shot of 50-60

> mgs m,th.  By lowering the dosage in more frequent

> shots this helps to control hormonal rollercoaster

> wise.  Giving testosterone is one one part of the

> equation , but have a qualified practioner evaluate also

> adrenal and thyroid to complement your TRT to its fullest

> extent. If e2 is elevated then proper e2 management is

> added.  Once proper e2 and T are stabilzed for 8 weeks

> then we add in HCG and dhea to finish off HRT to recieve

> optimal results with minimal side effects

>

>

> >

> > I have a few questions about taking testosterone, I am

> 41yrs old and

> > was diagnosed with hypogonadism, my level was 72 when

> they should be between 350-1000,my doctor said I've been

> hypogonadal for years due to small testicle size, low body

> and facial hair....

> >

> > He started me on injectable cypionate, 200mg every 2

> weeks.  Since I am very low on the scale do I still

> need to worry or worry at all about estrogen levels while

> taking this drug?...I can only find information on body

> builders that use high doses of testosterone.

> >

> > It's been a few days now taking my first shot, what

> should I expect from this dose besides the sore leg I have

> now........how long does this take to start working.

> >

> > Thanks for any help you may give,

> >

> > Steve

> >

>

>

>

>

> ------------------------------------

>

>